GERD….We’re In the Wall Street Journal

This is one of the weirder chapters in our lives lately…we’re in the Wall Street Journal! No, sadly…not because our multi-million dollar company just went public and our stocks are soaring thorough the roof. Sigh. I volunteer for a national association for Pediatric GERD, and agreed to talk with a reporter about our experience last Friday. The article is out today, you can read it here.

I try not to dwell on the part that pediatric GERD plays in our lives, but I have to say that it effects us far more than I’d like. It’s really hard when you can’t feed your kid, when he doesn’t want to eat, when you have to monitor everything that goes in his mouth. Isaiah is very good about knowing what he can’t have due to the fact that it will cause him serious problems, and what he *can* have but might have to pay for later with a tummy ache. He makes very good choices with what he eats and we try not to completely limit anything that won’t make him seriously sick…sometimes it’s good to have a little fun with food. For the most part, he’s doing really well. But he eats less than I’d like him to, he’s skinny and he isn’t growing as fast as most kids his age. It’s a struggle to get a kid to eat enough when eating often causes him pain. Then there’s the fact that before the reflux was under control he got sick and threw up fairly often, and now he has food aversions to many of the things he ate before he threw up. Sarah has this, too…foods that make reflux flare are not high on her list and she avoids them, even though she doesn’t have the GERD any more. I know a lot of women who developed food aversions during pregnancy that have persisted for years after the baby was born…I guess it’s kind of like that.

I was half kidding when I said in the article that we were still suffering from post traumatic stress from Isaiah’s screaming “colic”, but really it isn’t funny. I’m glad the WSJ took it seriously…although the crying varied from about 6 or 7 hours at the least to 20 hours per day at the worst, it was pretty much just constant crying.

You try everything you can think of, you rock, you pace, you swaddle, you try different ways of feeding, you cut everything out of your diet but chicken and rice in hopes that allergy-free breast milk will work, you try over the counter anti-gas drops, you try formula, you try putting the baby to bed in the car seat…the stroller…the baby swing. You sleep propped up with the baby on your chest. You put the baby in the car seat, get in the car and drive around at all hours of the day and night, hoping he will sleep. You can’t leave the baby with anyone, because he will just cry the whole time and most people can’t handle that. Nobody comes to visit you, because of the crying. You listen to everyone you know tell you what you are doing wrong to make the problem worse. You consult your doctor time and time again, and he tells you the best he can do is prescribe a sedative….for the baby or for you, you wonder? You wash load after load after load after load of laundry. You learn how to wash vomit out of the car seat, the carpet, the baby swing, pillows, blankets, and the cat. You get so little sleep that you can’t think straight, you don’t trust yourself to drive, and you fall asleep sitting up. When the baby isn’t crying, you still hear the screaming….it keeps ringing in your ears because silence is so unaccustomed. You hold your screaming baby and cry along with him, because nothing helps and your heart is breaking to see him in such pain.

Yeah, I guess it stays with you for years to come.

And really, we were very lucky! I didn’t realize at the time that Isaiah’s colic was due to reflux, and we were very lucky that things were not much worse. As a volunteer, I have gotten to know many parents of children with GERD and I feel very lucky that our experience didn’t become as serious as it could have. I know mothers who have watched their baby turn blue and stop breathing, because they aspirated vomit. They call 911, they ride to the hospital in an ambulance wondering if their baby will make it. I know mothers who have had that happen more than once. Mothers who took their newborn to the hospital with aspiration pneumonia and watched their tiny baby struggle to breath…and then had to do it all over again the next time it happened. I know mothers with babies who are fed through tubes, who have to hold their toddler down and shove a feeding tube up their nose knowing that the only other choice is their child not getting nutrients because they won’t eat. I know mothers whose babies are tube fed through a port in their stomach, and are having to gradually teach their children to eat because eating has caused so much suffering that the child just can’t do it, and has to learn how. I’ve talked on the phone with mothers who are looking for someone, anyone, who understands how hard it is when your child won’t eat and is losing weight, or has a constant stomach ache, or has issues with behaviour because they are in constant pain. Mothers whose children were being left out by other kids at school because their breath smelled like vomit all the time. GERD causes so much suffering! Most of the time, you can control it with medication and diet. Sometimes it requires surgery to get it under control. Some people suffer with it more than others, and many kids do grow out of it. It would sure be nice if research found some better ways to fix it!

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7 thoughts on “GERD….We’re In the Wall Street Journal

  1. This is what should have been in the article. More of this true life accounts. Thank you for talking with the wsj and sharing what you have gone through. But sadly the story was just a glimpse in the life of a child with GERD.

  2. Thank you for spreading the message and thank you for helping me to remember that life could be so much scarier! Our Katie could be sooooo much worse and I am so thankful for each and every “good day” that she has; I never take them for granted because they are so few and far between!

  3. This is such good info for families that have cousins etc with GERD. My grandaughter has it, she is 18 mos and about the size of a 9 mos old. She was on med’s until this summer but she also has Sensory Processing Disorder which complicates everything. I recommended my daughter read this to know others really understand. Blessings to you and yours as you share and help others through this trial.Noreen

  4. My mom, nananor’s passed your blog info along and I just had to leave a comment. As I was reading your writing my heart went out to you and your family. So many things you said echoed within my own ears of what we are walking through – I am thankful that God’s grace is sufficent when I haven’t slept through the night in 18 months 🙂 Blessings to you and your family!Kim

  5. Kim…I’m so sorry that you’re going through this! I totally understand where you are right now. It’s so hard to not have had a good night’s sleep for so long, you get to a point when even when the baby’s asleep you can’t settle in and fall asleep yourself…because you just keep waiting for her to wake up again. I have found a lot of support at the PAGER website (www.reflux.org). Please give me a call or drop me an email if you ever want to talk…sometimes it helps just to talk to someone who’s in the same boat! Blessings to you, too, and prayers for a good night’s sleep and a happy tummy for your little one! anerishale@comcast.net

  6. My daughter, now 18 months, has suffered from milk and soy allergies (the protein in them) and GERD since she was born. At 6 weeks old she had blood in her stool and we were told her intestines were bleeding from the milk allergy. She was put on the medical formula Neocate. Before she was, she cried for hours on end and into the night. Despite a short time of thinking that everything was finally okay, she started refusing her bottle and crying throughout the day. Whenever I offered her a bottle she’d fight it. She would only take an ounce or less of her bottle at a time, and she didn’t even want to do that. When she was about 41/2 months old she was diagnosed with acid reflux and put on Zantac and she is now also on Prevacid. We have been since told by doctors that her acid reflux is under control. However, although she’ll take her formula fine, when it comes to solid food (even baby food) she will eat very little and she has always been that way. Most days we’re lucky if she’ll get 160 or so calories from food. The rest is from her formula but limiting her intake of formula doesn’t give her the added incentive to eat solid food. She spits it out or throws it or bats it away. If she does eat “good”, it’s only one meal a day, typically dinner, and still it’s not enough. She’s not gaining much weight (and for a time was loosing weight) and falls in the 7th percentile. She had an upper scope and we were told everything appeared to be fine. But we’re also told that she’s very near the failure to thrive mark. My husband and I are very worried about her and we’ve been to so many doctors, who are all very concerned about her weight. However, nothing has worked. We just don’t know if she won’t eat much because of her medical condition or because she’s associating food with the pain she felt as an infant. And if this is true then why will she take her formula but not solid food? Has anyone had similar experiences? If so, what was causing this and what did you do? Please help!

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